Characterisation of user-defined health status in older adults with intellectual disabilities

Background   Older adults with Intellectual Disabilities (ID) have an excess disease burden that standard health assessments are designed to detect. Older adults with ID have a broader concept of health with dimensions of well being in addition to absence of disease in line with the World Health Organization's health definition. We sought to characterise user-defined health status in a sample of older adults with ID.
Methods   We administered a user-led health assessment to 57 adults with ID aged 40 years and over. Cluster analysis on user-defined health themes of participation, nutrition and hygiene/self-care identified clear separation of participants into a healthier and a less healthy group.
Results   Disease burden ( P  = 0.002) and medication use ( P  = 0.003) were greater in the less healthy group. The healthier group were taller ( P  = 0.005), stronger ( P  = 0.005) and had better vision ( P  < 0.001) than the less healthy group. Constipation ( P  = 0.014), urinary incontinence ( P  < 0.001) and faecal incontinence ( P  < 0.001) were commoner in the less healthy group. There were few significant differences between health groups on the majority of standard physical-examination items.
Conclusions   There is considerable overlap between user-defined health and that assessed by standard instruments. In addition, user-defined health encompasses aspects of physical fitness not captured by traditional disease-based health models.     

Unnoticed post-void residual urine volume in people with moderate to severe intellectual disabilities: prevalence and risk factors

Background   Increased post-void residual urine volume (PVR) is often seen in geriatric populations. People with intellectual disabilities (ID) have risk factors in common with these populations.
Aims   To investigate in adults with ID:

• • 

  Feasibility of portable ultrasound bladder scanning;
• • 

  Prevalence of PVR; and
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  Relations with proposed risk factors for PVR.

Methods   In a cross-sectional design, PVR was measured using ultrasound scanning in 346 adults with moderate to severe ID aged 18–82 years. Relationship between increased PVR and the following risk factors was assessed: age, level of ID, gender, ambulancy, medication, chronic illnesses, incontinence and profound multiple disabilities (PMD). Acceptation of scanning and manageability were noted.
Results   Feasibility: All participants were cooperatively undergoing the ultrasound scan and all outcomes were sufficiently interpretable. Prevalence: PVR ≥ 150 mL was newly identified in 30/346 persons (8.7%, 95% confidence interval 5.92–12.14). Associations: Higher age ( P  = 0.001), laxative use ( P  = 0.001), chronic illnesses other than epilepsy ( P  = 0.005), profound ID ( P  = 0.008), incontinence ( P  = 0.048) and immobility ( P  = 0.005) are determinants that were associated with urinary retention.
Conclusions   The bladder ultrasound scan is a feasible method to identify increased PVR in adults with more severe levels of ID. The prevalence of PVR in adults is similar to prevalences found in the geriatric general population.     

Community management of intellectual disabilities in Pakistan: a mixed methods study

Background   Pakistan has one of the highest reported rates of childhood intellectual disabilities (ID) in the world. Prevalence estimates vary from 19.1/1000 for serious ID to 65/1000 for mild ID.
Methods   We surveyed carers of persons with ID ( n  = 100) using quantitative and qualitative instruments. We conducted in-depth interviews of carers ( n  = 16) and key primary health providers ( n  = 10). We also carried out focus groups ( n  = 7). Data were triangulated and interpreted in light of peer reviewed literature.
Results   There was a delay of 2.92 (95% CI 1.9 to 3.94) to 4.17 (95% CI 2.34 to 6.01) years between detection and seeking of care. Parental stress associated with caring for these children was high (mean Self-Reporting Questionnaire score 8.4; 95% CI 6.80 to 9.91). Home management consisted mainly of physical containment. Stigma associated with ID contributed to decreased opportunity for these children and families to participate in community activities. There was a lack of knowledge about causation and effective interventions for ID.
Conclusions   Our findings suggest that there is significant delay in detection of ID especially in rural setting where more than 70% of population of Pakistan resides. This missed opportunity for rehabilitation in early formative years is a cause of significant distress for the caregivers who rarely receive valid information about course, prognosis and what remedial action to take. There is a need to develop feasible, cost-effective, community level interventions, which can be integrated into existing healthcare systems.     

Headache after concussion

Background and purpose:  Chronic post-traumatic headache attributed to mild head injury is a somewhat disputed headache diagnosis. A main object of this study was to assess the validity of this diagnosis by studying the headache pattern of concussed patients that participated in one historic ( n  = 131) and one prospective cohort ( n  = 217) study.
Methods:  Head injury patients were recruited from two hospitals in Kaunas, Lithuania. Controls were recruited amongst patients with minor orthopaedic traumas not involving the head and neck.
Results:  When data from the two studies were pooled, no difference in any headache category (diagnosis, attack frequency, symptoms) was found one or more years after the trauma, except that photophobia was somewhat more prevalent amongst the concussed patients. In both injury groups, the existence of pre-traumatic headache was a predictor of post-traumatic headache, although pre-traumatic headache seems to have been underreported amongst the concussed patients. There was a significant negative correlation between the duration of unconsciousness and the headache.
Conclusions:  This negative correlation, and the lack of specificity indicates that headache occurring 3 months or more after concussion is not caused by the head or brain injury. Rather it may represent an episode of one of the primary headaches, possibly induced by the stress of the situation.     

High prevalence of obesity in ambulatory children and adolescents with intellectual disability

Background   Obesity prevalence is unusually high among adults with intellectual disability (ID). There is limited and conflicting evidence on obesity prevalence among ambulatory children and adolescents with ID. The present study aimed to estimate obesity prevalence in this group and to compare with population prevalence.
Methods   Survey of nine schools ( n  = 206, 150 boys) for ambulatory children and adolescents with mild-moderate ID in Scotland in 2007. Obesity was defined as measured body mass index (BMI) at or above the 95th percentile relative to UK 1990 reference data, and using the international definition based on BMI. Obesity prevalence observed was compared against Scottish population data on obesity prevalence from the most recent nationally representative survey.
Results   Obesity prevalence (at or above 95th percentile for BMI) was 36%, and was significantly higher among those attending secondary schools compared with primary schools ( P  < 0.01). Prevalence of obesity was significantly higher than in the general paediatric population in both boys and girls ( P  < 0.01).
Conclusions   The present study suggests that that obesity may be very prevalent among ambulatory children and adolescents with ID, and that increased obesity risk may begin in childhood.     

Behavioural flexibility in individuals with Angelman syndrome, Down syndrome, non-specific intellectual disability and Autism spectrum disorder

Background   Little is known about behavioural flexibility in children and adults with Angelman syndrome and whether people with this syndrome have more or less problems in being behaviourally flexible as compared with other people.
Method   Behavioural flexibility scores were assessed in 129 individuals with Angelman syndrome using 11 items from the Behavioural Flexibility Rating Scale-Revised ( Green et al. 2007 ). Level of behavioural flexibility scores in individuals with Angelman syndrome ( N  = 129) was compared with that of people with non-specific intellectual disability (ID) ( N  = 90), Down syndrome ( N  = 398) and Autism spectrum disorder ( N  = 235).
Results   Comparative analyses show that individuals with Angelman syndrome were more flexible than those with non-specific ID ( P  < 0.001) and those with Autism spectrum disorder ( P  < 0.01). There were no differences in behavioural flexibility scores between individuals with Angelman syndrome and those with Down syndrome ( P  = 0.94).
Conclusion   It is concluded that individuals with Angelman syndrome are comparatively flexible in their behaviour.     

Clinical outcomes of a specialised inpatient unit for adults with mild to severe intellectual disability and mental illness

Background   Limitations of general psychiatric services have led to the development of specialised psychiatric programmes for patients with intellectual disability (ID) and mental health needs. Few studies have examined treatment outcomes of specialised inpatient units, and no studies have explored how the effects of intervention may differ for individuals at varying levels of cognitive ability. The present study examined clinical outcomes of inpatients with mild ID in contrast to inpatients with moderate to severe ID within the same service.
Method   Thirty-three patients (17 with mild ID and 16 with moderate to severe ID) discharged between 2006 and 2008 from a specialised inpatient unit in Canada for adults with ID and mental illness were studied. In addition to examining change in scores on clinical measures, outcomes with regard to length of stay, diagnostic change, residential change and re-admission to hospital were explored.
Results   Both groups demonstrated clinical improvement from admission to discharge. However, only patients with mild ID demonstrated improvements on the Global Assessment of Functioning.
Conclusions   This study is one of the first to consider outcomes of higher and lower functioning individuals with ID on a specialised inpatient unit. Results suggest that outcomes may be different for these groups, and some clinical measures may be more sensitive to changes in patients with more severe disabilities.     

Asthma, smoking and BMI in adults with intellectual disabilities: a community-based survey

Background   Recent research evidence from the general population has shown that tobacco smoking and raised body mass index (BMI) are associated with worse asthma outcomes. There are indications that asthma morbidity and mortality may be higher among people with intellectual disabilities (ID) than the general population, but the reason for this is not known. This is the first study to investigate the extent of smoking and higher than recommended BMI among adults with ID and a diagnosis of asthma.
Method   Health-related data for 1097 adults with ID were collected from 28 primary care practices in Bristol, UK.
Results   Prevalence of asthma in this sample of adults with ID was 12% which was much higher than among the general population living in the region. The 132 patients with asthma were found to be nearly twice as likely to be current smokers as patients with ID who did not have asthma (29.5% vs. 15.6%). Smoking rates were higher among men than women with asthma (35.7% vs. 22.6%). Patients diagnosed with asthma were also more likely to be obese (BMI ≥ 30) than patients with ID but no asthma (42.7% vs. 31.6%). Obesity was particularly a problem among women with asthma as more than half (52.1%) had a BMI ≥ 30.
Conclusions   A very high proportion of patients with ID and asthma were found to be current smokers and/or obese. There is now strong research evidence that both smoking and obesity are implicated in the development of asthma and associated with worse disease outcomes. This study highlights the urgent need for programmes aimed at providing support for people with ID and asthma to stop smoking and to achieve a healthy body weight.     

Normative data on Benton Visual Form Discrimination Test for older adults and impaired scores in Clinical Dementia Rating 0.5 participants: Community-based study. The Osaki–Tajiri Project

Aims:  The Benton Visual Form Discrimination test (VFD) is one of the non-verbal tests to assess the capacity for complex visual form discrimination. The purposes of the present study were to investigate the effects of age and education level of the VFD in healthy elderly subjects, rigorously excluding participants with Clinical Dementia Rating (CDR) 0.5, and the characteristics of VFD patterns in CDR 0.5 participants.
Methods:  The 597 participants included CDR 0 (healthy elderly, n  = 405), CDR 0.5 (mild cognitive impairment, n  = 161), and CDR 1 and 2 (dementia, n  = 31). The VFD, Digit Forwards, Digit Backwards and Rey–Osterrieth Complex Figure Test (RCFT) copying were used for neuropsychological assessment.
Results:  There were significant effects of age and education level on the VFD in healthy participants, and the CDR 0.5 group had a lower score on the VFD than the healthy group. Low performance on the VFD was associated with Digit Backward and RCFT copying in both healthy and CDR 0.5 participants.
Conclusions:  CDR 0.5 participants exhibit deficits of visual form discrimination related to attention, visual construction and organization.     

Changes in coronary heart disease risk profile of adults with intellectual disabilities following a physical activity intervention

Background   Regular physical activity is one of the modifiable risk factors for coronary heart disease (CHD). With an increasing age profile and similar patterns of morbidity to the general population, persons with intellectual disabilities (ID) and their caregivers would benefit from data that indicate CHD risk factors. Knowledge of the CHD risk factors and the changes a physical activity intervention may have on theses risk factors will facilitate future intervention programmes.
Methods   A cohort of 100 men and women between the ages of 21 and 73 years with ID living in a community group home in the North-West Province of South Africa was recruited. A CHD risk profile was compiled by means of a questionnaire and physical assessment that included resting blood pressure, body mass index, non-fasting glucose and cholesterol and cardiorespiratory fitness. A 12-week physical activity intervention was then conducted 3 days/week after which the baseline measurements were repeated.
Results   The results indicated that 85% of the participants were inactive, while 67% were overweight and obese. Hypertension (6.1%) and smoking (6.1%) were relatively low in this population with ID. Glucose concentrations above the recommended cut-off values were observed in 28% of the participants. Total cholesterol concentrations above normal were measured in 23% of the participants. The physical activity intervention reduced inactivity to 50% and resulted in a significant increase in cardiorespiratory fitness and a decrease in percentage body fat in both men and women.
Conclusion   Inactivity is a major risk factor in this population with ID living in a community group setting. The implementation of the physical activity intervention significantly reduced the risk factors for CHD.     

Does visual impairment lead to additional disability in adults with intellectual disabilities?

Background   This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID).
Method   In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based questionnaires, prior to expert assessment of visual function. With linear regression analysis the percentage of variance, explained by levels of visual function, was calculated for the total population and per ID level.
Results   A total of 107/269 participants were visually impaired or blind (WHO criteria). On top of the decrease by ID visual impairment significantly decreased daily living skills, communication & language, recognition/communication. Visual impairment did not cause more self-absorbed and withdrawn behaviour or anxiety. Peculiar looking habits correlated with visual impairment and not with ID. In the groups with moderate and severe ID this effect seems stronger than in the group with profound ID.
Conclusion   Although ID alone impairs daily functioning, visual impairment diminishes the daily functioning even more. Timely detection and treatment or rehabilitation of visual impairment may positively influence daily functioning, language development, initiative and persistence, social skills, communication skills and insecure movement.     

Reliability and validity of the revised Triple C: Checklist of Communicative Competencies for adults with severe and multiple disabilities

Aims   Few tools are available to assess the communication skills of adults with severe and multiple disabilities functioning at unintentional to early symbolic levels. An exception is the Triple C: C hecklist of C ommunicative C ompetencies. In this study, aspects of support worker and clinician agreement, internal consistency and construct validity of a revised version of the Triple C were explored.
Method   Triple C checklists were completed for 72 adults with severe intellectual disabilities (ID) by 118 support workers and stages were assigned by the researchers. Two support workers completed checklists for each of 68 adults with ID. Three researchers also conducted direct observations of 20 adults with ID.
Results   The average support worker agreement for items across the five stages of the Triple C ranged from 81% to 87%; agreement for stage assignment based on first and second support worker checklists was moderate to high ( k  = 0.63). Internal consistency was high (KR20 = 0.97); the stages were found to tap one factor (accounting for ∼74% of variance), interpreted to be unintentional to early symbolic communication. Agreements between stages based on researcher observations and support worker-completed checklists were 35% and 71% across first and second support workers.
Conclusion   The revised Triple C provides a reliable means of gathering data on which to determine the communication skills of adults with severe and multiple disabilities. The results support a collaborative use of the Triple C, such that a speech-language pathologist or other communication specialist works with a support worker to ensure understanding of the skills observed and development of appropriate intervention strategies.     

Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives

Background   Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID.
Method   A questionnaire survey which included case scenarios was carried out with family ( n  = 155) and staff carers ( n  = 153) of people with an ID in the west of Ireland.
Results   In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships.
Conclusion   When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.     

Astrocyte characterization in the multiple sclerosis glial scar

Introduction:  Dense astrocytic scarring in chronic multiple sclerosis (MS) plaques inhibits tissue repair. However, at the rim of a lesion the glial scar fails to form despite the presence of reactive astrocytes. Animal studies have shown that astrocyte antigen expression varies depending on astrocyte type and location. Characterization of human astrocytes in MS tissue may identify markers relevant to the glial scar.
Materials and methods:  Astrocyte antigenic phenotype was investigated in subventricular white matter by immunocytochemistry and Western blotting. Snap-frozen tissue from normal controls ( n  = 4), MS normal appearing white matter ( n  = 5) and lesions [acute ( n  = 7), subacute ( n  = 7) and chronic ( n  = 13)] was studied.
Results:  As expected, glial fibrillary acidic protein and vimentin expression was elevated in scar astrocytes. In addition there was increased expression of nestin, embryonic neural cell adhesion molecule, epidermal growth factor receptor, nerve growth factor and its receptor p75, and in a subpopulation of scar astrocytes, basic fibroblast growth factor.
Conclusion:  Changes in expression of proteins associated with development, growth factors and growth factor receptors are characteristic of the scar astrocyte phenotype in chronic MS lesions. These proteins may be of relevance to glial scar formation and tissue repair.     

Algorithm-guided treatment versus treatment as usual for major depression

Aims:  The remission rates for patients with major depressive disorder (MDD) during algorithm-guided treatment (AGT), which consisted of four treatment strategy steps were prospectively compared with treatment as usual (TAU).
Methods:  The remission rates of patients with mild or moderate MDD during AGT ( n  = 83) were compared with TAU ( n  = 127).
Results:  The remission rate in the AGT group (60.2%) was approximately 10% greater than that in the TAU group (49.7%). The median number of days to achieve remission in the AGT group (93 days) was half as long as that in the TAU group (191 days). The hazard ratio of remission was 1.5 (95% confidence interval: = 1.2–1.8). A higher rate of lithium augmentation in the AGT group (20.5%) compared to theTAU (4.7%) may have led to the greater remission rate. Most participants who did not achieve remission either during the initial or second treatment steps dropped out from AGT.
Conclusions:  AGT may be superior to TAU for patients with mild or moderate MDD, based on the remission rates achieved. The later treatment steps in the AGT, however, were rarely utilized because participants who did not receive any benefit dropped out early.     

Penile hygiene: puberty, paraphimosis and personal care for men and boys with an intellectual disability

Background   Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined.
Method   This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue.
Results   Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID.
Conclusions   The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.     

Brief report: Aggressive challenging behaviour in adults with intellectual disability following community resettlement

Background   Aggressive challenging behaviour is common in adults with intellectual disability (ID) in long-term care facilities. The government's commitment to the closure of all facilities in England has led to concerns over how to manage this behaviour in the community. The aim of this study was to assess changes in aggressive challenging behaviour and psychotropic drug use in adults with ID following resettlement using a person-centred approach.
Method   The Modified Overt Aggression Scale was administered to carers of 49 adults with ID prior to discharge from a long-stay hospital and 6 months and 1 year after community resettlement.
Results   All areas of aggressive challenging behaviour reduced significantly between baseline and 6 months following resettlement ( P  < 0.001). This reduction remained (but did not decrease further) at 1-year follow-up.
Conclusions   Further work is needed to evaluate the role of environmental setting on aggressive challenging behaviour in adults with ID.     

Five Years On: Public Sector Service Use Related to Mental Health in Young People with ADHD or Hyperkinetic Disorder Five Years After Diagnosis

Background:  Little is known about ongoing service use among young people with ADHD, but this information is important to the development of services to support these young people.
Methods:  A cohort of young people with ADHD or hyperkinetic disorder ( n  = 115) was followed up five to seven years after diagnosis. Details are presented of their use of public sector services over the 12 months preceding reassessment, compared to young people with ADHD from a large epidemiological study.
Results:  Most children remained in contact with CAMHS, with high rates of contact with schools, educational professionals and the criminal justice system. Nearly all had taken medication at some point, while many still were using it. There were low reported rates of psychological and group interventions within the last twelve months, but this does not rule out earlier access to such treatments.
Conclusions:  Children with ADHD utilise long-term support from public sector services, and cross agency strategies or clinics may help to optimise functioning.     

The development of a new measure for the assessment of psychopathology in adults with intellectual disability

Background   People with intellectual disability (ID) and untreated psychiatric disorder lead unnecessarily difficult and unhappy lives. The prevalence of mental illness in children and adults with ID is greater than that found in the general population. A carer-completed checklist of psychopathology that could be used with both children and adults would help identify those individuals with ID most likely to have a mental health problem, help ensure that they receive the limited services that are usually available and also assist the process of clinical assessment, diagnosis and management.
Method   This research aimed to develop a reliable and valid carer-completed checklist of psychopathology for adults with ID by redeveloping an existing measure for children with ID, the Developmental Behaviour Checklist (DBC-P). The new checklist, The Developmental Behaviour Checklist for Adults (DBC-A) was devised by changing, deleting and adding to DBC-P items. Reliability studies were conducted with paid and family carers, and DBC-A scores were compared with the results from two other measures of psychopathology.
Results   One DBC-P item was deleted, seven items changed and 12 items added. The psychometric properties of this new checklist, the DBC for Adults with ID (DBC-A), were investigated and found to be satisfactory. Intraclass correlations for test-retest and inter-rater reliability ranged from 0.72 to 0.85, and concurrent validity with two measures of emotional and behavioural disturbance was satisfactory.
Conclusions   The carer-completed DBC-A provides a broad and comprehensive survey of the emotional and behavioural problems of adults with ID. It has satisfactory psychometric properties and therefore can be used with confidence in clinical, research and service settings, and its development allows continuous assessment of psychopathology across the lifespan for all people with ID.     

Total daily sleep duration and the risk of dementia: a prospective population-based study

Background and purpose:  We determined in a population-based study whether sleep duration was associated with an increased risk of incident dementia.
Methods:  In a population-based study in central Spain, participants were evaluated at baseline and 3 years later. Baseline demographic variables were recorded and participants indicated their daily sleep duration as the sum of night-time sleep and daytime napping. The average daily total sleep duration was grouped into five categories: ≤5 (short sleepers), 6, 7 (reference), 8, and ≥9 h (long sleepers). We identified all cases with incident dementia, diagnosed using DSM-IV criteria.
Results:  Three thousand two hundred eighty six participants with baseline information about sleep duration had a median duration of follow-up of 3.2 years. There were 140 incident cases of dementia. The relative risks (RR) for short sleepers and for long sleepers were 2.36 (95% CI = 1.07–5.21, P  = 0.03) and 2.40 (95% CI = 1.20–4.81, P  = 0.01), respectively. After adjustment for potential confounders, the RR was only marginally increased for short sleepers (1.87, 95% CI = 0.85–4.15, P  = 0.12) but remained increased for long sleepers (2.18; 95% CI = 1.09–4.37, P  = 0.03).
Conclusions:  Prolonged sleep duration (night-time sleep and daytime napping) may be associated with an increased risk of dementia.